II 

118TH CONGRESS 

2D SESSION S. 5097 

To amend title XIX of the Social Security Act to establish a demonstration 

project to improve outpatient clinical care for individuals with sickle 

cell disease. 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 18, 2024 

Mr. BOOKER (for himself, Mr. SCOTT of South Carolina, and Mr. CASSIDY) 

introduced the following bill; which was read twice and referred to the 

Committee on Finance 

A BILL 

To amend title XIX of the Social Security Act to establish 

a demonstration project to improve outpatient clinical 

care for individuals with sickle cell disease. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Sickle Cell Disease 

5 Comprehensive Care Act’’. 


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1 SEC. 2. ENABLING STATE MEDICAID PROGRAMS TO PRO2 VIDE CARE THROUGH HEALTH HOMES TO IN3 DIVIDUALS WITH SICKLE CELL DISEASE. 

4 Section 1945 of the Social Security Act (42 U.S.C. 

5 1396w–4) is amended— 

6 (1) in subsection (a), by inserting ‘‘(and, begin7 ning January 1, 2025, to eligible individuals with 

8 sickle cell disease (as defined in subsection (c)(5)))’’ 

9 after ‘‘chronic conditions’’; 

10 (2) in subsection (c)— 

11 (A) in paragraph (1), by inserting ‘‘and 

12 each eligible individual with sickle cell disease’’ 

13 after ‘‘chronic conditions’’; and 

14 (B) by adding at the end the following new 

15 paragraph: 

16 ‘‘(5) SPECIAL RULE RELATING TO SICKLE CELL

17 DISEASE HEALTH HOMES.— 

18 ‘‘(A) IN GENERAL.—Beginning January 1, 

19 2025, the Secretary may approve a State plan 

20 amendment under this section that is designed 

21 to provide health home services primarily to eli22 gible individuals with sickle cell disease (in this 

23 section referred to as a ‘sickle cell disease-fo24 cused State plan amendment’). 

25 ‘‘(B) REQUIREMENT TO PROVIDE DENTAL

26 AND VISION SERVICES.—In the case of a sickle 


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1 cell disease-focused State plan amendment ap2 proved by the Secretary on or after January 1, 

3 2025, a State shall ensure the provision of den4 tal and vision services to eligible individuals 

5 with sickle cell disease who are enrolled in such 

6 health home. Such requirement shall apply irre7 spective of existing requirements related to 

8 comparability or whether or not the State pro9 vides dental or vision services to other Medicaid 

10 beneficiaries. 

11 ‘‘(C) REPORT REQUIREMENTS.— 

12 ‘‘(i) IN GENERAL.—In the case of a 

13 State with a sickle cell disease-focused 

14 State plan amendment, such State shall, at 

15 the end of the first 8 fiscal year quarters 

16 that such State plan amendment is in ef17 fect, submit to the Secretary a report on 

18 the following, with respect to eligible indi19 viduals with sickle cell disease provided 

20 health home services under such State plan 

21 amendment: 

22 ‘‘(I) The quality of health care 

23 provided to such individuals, with a 

24 focus on outcomes relevant to the re25 covery of each such individual. 


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1 ‘‘(II) The access of such individ2 uals to health care. 

3 ‘‘(III) The total expenditures of 

4 such individuals for health care. 

5 ‘‘(ii) APPLICABLE MEASURES.—For 

6 purposes of the report required under this 

7 subparagraph, the Secretary shall specify 

8 all applicable measures for determining 

9 quality of health care provided to eligible 

10 individuals with sickle cell disease, access 

11 to health care by such individuals, and ex12 penditures on health care by such individ13 uals. 

14 ‘‘(D) BEST PRACTICES.—Not later than 

15 June 30, 2025, the Secretary shall make pub16 licly available on the website of the Centers for 

17 Medicare & Medicaid Services best practices for 

18 designing and implementing a sickle cell dis19 ease-focused State plan amendment, based on 

20 clinical practice guidelines for sickle cell disease 

21 developed by medical specialty societies and in 

22 consultation with sickle cell disease providers 

23 and patient advocacy organizations. 

24 ‘‘(E) DEFINITIONS.—For purposes of this 

25 section: 


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1 ‘‘(i) ELIGIBLE INDIVIDUAL WITH

2 SICKLE CELL DISEASE.—The term ‘eligible 

3 individual with sickle cell disease’ means, 

4 with respect to a State, an individual who 

5 satisfies all of the following: 

6 ‘‘(I) The individual is eligible for 

7 medical assistance under the State 

8 plan or under a waiver of such plan. 

9 ‘‘(II) The individual has sickle 

10 cell disease. 

11 ‘‘(III) The individual may or may 

12 not have previously received health 

13 home services under any other State 

14 plan amendment approved for the 

15 State under this section by the Sec16 retary. 

17 ‘‘(ii) SICKLE CELL DISEASE.—The 

18 term ‘sickle cell disease’ means an inher19 ited blood disorder affecting red blood cells 

20 that occurs when an individual has inher21 ited a sickle cell gene from each parent, as 

22 identified by a newborn screening or other 

23 genetic test.’’; and 


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1 (3) in subsection (h)(5), by inserting ‘‘or a 

2 health home for eligible individuals with sickle cell 

3 disease’’ after ‘‘chronic conditions’’. 

Æ 


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